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Monday, July 16, 2012

Person First: An Evolution in Thinking

If you were to sit down and read my blog Diary of a Mom from its inception back in 2008, I’m sure you’d notice some pretty dramatic changes. Many of the words I use and the way I use them have changed. And the change in verbiage is reflective of a change -- an evolution really -- in my understanding of autism.

When Brooke was first diagnosed, I bristled at the word ‘autistic’ when it was assigned to her in conversation. I actually found it offensive. “Person first!” I would shout in my head as I calmly responded, “my daughter HAS autism,” emphatically yet (theoretically) politely ‘correcting’ the perceived gaffe.

And something shifted. I had never considered the words nor what they represented from the inside out. Reading Jim’s words turned the whole conversation upside down. The switch had been tripped on a life-changing evolution in my thinking.

It changed me -- or more accurately, it began a process of changing me. I started to think differently. I started to test it out -- to feel it in my mouth -- autistic. I started to bristle less when I heard it. But didn’t adopt it completely. I wasn’t ready. And looking back, I can only conclude that I didn’t because I wasn’t ready to accept that autism was a PART of my kid.

It is.

As John Robison points out in his book Be Different, when we talk about people having something, it’s something bad. He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, “He has intelligence?” or “Wow, she really has giftedness and talentedness?”

So when we say, “has autism” aren’t we conveying a message to our kid that what they “have” ain’t good?

I come back so often to John’s words about the demonization of autism. They’ve made their way into heaven knows how many of my posts over time. But there’s a reason for that:

For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me?

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

To the autistic adults that I know, and I have the privilege of knowing a lot of autistic adults, the idea that their autism could somehow be separate from their identity, removable, any less than an integral part of how they see and smell and taste and hear -- and function in -- the world is patently absurd. To one friend that I spoke with about the 50 Cent gaffe, the idea that the word itself could be an insult is laughable because that friend -- and the autistic community of which he is a part -- have claimed it. It’s theirs. Let anyone else use it as they will. It can’t hurt unless they allow it to.

Lydia Brown wrote an utterly fabulous post on this topic at her blog, Autistic Hoya (note: not Hoya with Autism). I have begun to borrow liberally from that post when trying to explain my feelings on the issue to others.

I am grateful to Jim and John and Lydia for giving me the language to ask, “So when we you talk about other parts of your identity, do you say that you have Jewishness? Catholicness? Gayness?”

Because I have had the chance to explore and digest their perspectives, I now frame the conversation around the question, “If you are referred to as Jewish or Catholic, does that mean that the speaker who has described you as such has pin-holed your entire identity into your religious preference? If someone says ‘He’s gay’ have they somehow negated the fact that he also plays a mean guitar? Of course not.

So just as one can be described as Jewish or Catholic or gay without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too. The word doesn’t negate the rest of a human being, it simply acknowledges and validates the reality of that person’s experience. Yes, I bolded that on purpose. Because for me, it’s the crux of this whole messy ball of wax.

I feel like I have to say the following. My thoughts here are just that -- MY thoughts. They are, as everything here always is, based on MY experience with MY kid and in the context of the people in OUR world. I am not trying to tell anyone else how they should refer to their child, and I’d certainly never dream of telling anyone how they should describe themselves. These are intensely personal decisions. Decisions that I hope to God my daughter soon has the capacity to make for herself. In the meantime, I have to follow my gut to find the language that I think is the most respectful of who she is. Yeah, I bolded that too.

My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts -- her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents -- and so much more we will have the joy of watching emerge as she grows.

When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damn proud of it.” Heck, she could even throw in, “I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her -- forged and fostered by adults -- adults who, in my experience, choose to be called autistic.